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A Letter to Myself Podcast: Battling dementia in her 50s, Alison Lim fights to remember words

LaksaNews

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Warning: This story contains references to suicide and suicidal ideation.

SINGAPORE: Dementia is often associated with old age, but for some, the disease strikes much earlier than expected.

For Alison Lim, a fomer corporate executive in the hospitality sector, the diagnosis of primary progressive aphasia – a rare type of dementia – came in her early 50s. Her life, once filled with boardrooms and excel sheets, was suddenly upended by a condition that would rob her of her most basic tool: Language.

The first sign was innocuous. On a family trip in 2012, Alison mistakenly called guacamole - "Guatemale". Her family laughed it off. “Any time a word (got) jumbled up, we would say ‘Haha, Guatemala,’” Jamie, 27, Alison’s daughter, recalled with a laugh. “It didn’t occur to any of us that it might be a symptom of something.”

But that trip was full of similar moments - forgetting or jumbling up words that Alison brushed off at the time. But soon, these innocent mistakes became impossible to ignore. She began to forget basic descriptions, calling everything a phone.

I was calling the car, ‘the phone’, the fridge, ‘the phone’, the table, ‘the phone’.

Recognising the signs from her husband’s family history of dementia, Alison sought help.

However, her path to treatment was anything but straightforward. The neurologist told Alison, "You’re actually much better than me," when her blood tests came back fine.

But Alison insisted there was something amiss and after MRI and PET scans, she finally found the answer to her symptoms: Primary progressive aphasia, a type of dementia that predominantly affects speech and comprehension.

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Alison pictured during her time as a corporate executive in the hospitality sector. (Photo: Alison Lim)
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Young Alison and Jamie. (Photo: Alison Lim)
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"The biggest thing I would say to myself is, 'Trust yourself and trust your mother. Trust the relationship that you have and just have fun,'" Jamie reflects. (Photo: Alison Lim)

LEANING ON HER DAUGHTER​


What followed was a roller coaster of good and bad days. There were moments when she felt perfectly normal and other times when even brushing her teeth became an insurmountable task.

“I brushed my teeth three or four times. I (would) shower and (then) go back and shower again.” Within months of her diagnosis, Alison found herself struggling with basic tasks. Words she once effortlessly commanded would vanish mid-sentence, leaving her fumbling to communicate even the simplest thoughts.

Choking back tears, Alison says she thought she had more time to deal with the intensity of the disease.

But, within months I was not the same person ... I suddenly realised that I (couldn’t) call Jamie’s name. It was like walking into a very, very dark room and everything is right there, (but) I cannot see it.
At her lowest point, she found herself completely lost and unable to tell her husband where she was so he could come and get her.
I was crying and screaming ... I thought, okay, this is it. Just throw myself into the highway and finish it. Because really, nobody can help me.

But her family refused to let her be defeated by the disease.

Jamie in particular, made an extraordinary effort to learn how to adapt and stay connected to her mother. They even created a non-verbal communication method where a specific touch would indicate the level of pain Alison felt.

Anxiety was managed with honest conversation – Alison has made it clear she wants to be in a nursing facility to reduce the burden of caregiving on her daughter. Something Jamie is slowly learning to accept.

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"After my diagnosis, I've become far calmer and a better listener. And also, because of my own issues, I'm able to understand her issues much better so we are able to share and have a good dialogue," Alison shares. (Photo: Alison Lim)
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Alison and Jamie share a tight embrace. (Photo: Alison Lim)

“(Jamie) is my float. This partnership is the most important because without having somebody to discuss things or ... to tell my pain or my fears (to), I will have to capture it myself,” she said.

This bond has become the foundation for everything they have built together. In 2016, shortly after her diagnosis, Alison and Jamie co-founded Dementia & Co., a support network for raising dementia awareness and helping families navigate similar challenges.

Today, she embraces the motto "love the new me", a reminder to find joy and acceptance despite life’s imperfections. Through their advocacy, Alison and Jamie have reshaped what life with dementia can look like – not just for themselves, but for others too.

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Dementia & Co, formed by Alison and Jamie shortly after her diagnosis in 2016, brings people with dementia and their families together to share experiences and create new joy together. (Photo: Alison Lim)
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Alison speaking at a dementia awareness campaign for Dementia & Co. (Photo: Alison Lim)
Now that they’ve found purpose, acceptance, and a deeper connection through illness, what would mother and daughter say in a letter to themselves?

Listen to Alison's story on A Letter to Myself. This podcast is a special selection of CNA938’s A Letter to Myself – a show helmed by presenter Joel Chua. In this weekly podcast, Joel speaks to people from all walks of life who have extraordinary life lessons to share.

If you know someone who has a good story to share that can inspire listeners, please write to cnapodcasts [at] mediacorp.com.sg

Follow A Letter to Myself on Apple Podcasts or Spotify.

Where to get help:

Samaritans of Singapore Hotline: 1767

Institute of Mental Health’s Helpline: 6389 2222

Singapore Association for Mental Health Helpline: 1800 283 7019

You can also find a list of international helplines here. If someone you know is at immediate risk, call 24-hour emergency medical services.


Source: CNA/ty

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